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Author
Topic: Mini update (Read 73583 times)

I am not surprised at the people who are interested in her and your situation...we all have grown to love her and hope she is responding to the treatments... we want to see you both again this summer.....

I'm pissed. I'm frustrated. And I'm just about undone. Why is it so freakin complicated? Pick up the phone, dial 10 numbers, and tell me what my child's lab numbers are. Am I asking too much? I just left yet ANOTHER message for someone to PLEASE call me and let me know Mim's ID numbers. Will they call me back? I can only hope.

Hubby will be near the hospital today seeing clients. I called and asked if they would print out Mim's labs so he can pick them up. I was told that he couldn't have them unless I signed a release! What the heck? He's her FATHER, for crying out loud! He's in the system, can tell them everything in the computer, has picture ID, so what's the issue? The best they could do was have me leave another message with the same secretary / nurse that's already gotten 8 messages.

Oh, and if that's not got your hyde chapped, get this. I got a phone call yesterday UNscheduling Mim's neuro appointment. They said that a doctor has to refer her. They couldn't tell me that BEFORE they scheduled her? I begged them not to wipe out her appointment and put in a frantic call to Dr. D. The secretary said that she'd call and make the referral.

Her PID is still not back - I have no idea where she is - and isn't allowing appointments to be rescheduled. Her primary practice is CF, with ID being secondary. Another doctor is covering her CF patients, but not her ID patients. In other words, there's not a soul in this state that I can call to talk about Mim's numbers and changing her meds.

She's still in pain and is BEGGING me to go back to a doctor - any doctor. Her head hurts and she said it sounds like someone is breaking glass in her ears. There's not a thing I can do for her except make more stupid phone calls that aren't getting me anywhere. I keep promising her that I'll find someone to make it better and, so far, I haven't been able to keep that promise.

So sorry to hear of the frustration with the system and the non responsiveness......particularly upset that Mini is still hurting in so many ways,,,I know it is a long shot but "back to the ER?"" is that even and option?? I wish I could do more than just sympathize with your frustration but be assured all the good vibes that can be mustered are coming your way...I think you need a hot soak and glass of wine before you attempt more contacts with the bureaucracy...

I just posted her ID labs in the other thread. I assume everyone that reads that one reads this one and vice-versa. I tried to keep my emotions out of the other thread, but I didn't do so well in that aspect. Bottom line is that her CD4s are trending down and her PID is MIA. I just kept telling whoever the doctor was that called that she's only 8..she's only 8. She's going through hell and she's only 8. I was trying not to cry. Didn't do so well there, either.

He agreed that she needs to be seen and said he make some calls. I'm not holding my breath.

Mum, I know it's little consolation , but we're all here with you, as much as we can be. It's absolutely horrible what you and Mini are going through, and I don't even know what to say. It breaks my heart to think a child is begging to see a doctor, and they really couldn't care less about it.

Just know that we're here, following and hoping for answers right alongside of you.

Sorrow may last for a night, but JOY comes in the morning! I would like to introduce you to Mim's NEW ID doctor: Ellis Frazier. Our 1st appointment with him is March 26th at 1:30pm. He's about 4 1/2hrs away, so we'll be leaving at 9am. I'm very excited.

Mim said that the noise in her ears is quieter today but it didn't make her headache go away. We told her that we found another doctor that we believe will be able to help her. She smiled. Haven't seen that in a while. Things are moving.

I want to say thank you, with all my heart to mjmel who not only put us in contact with Dr. Frazier, but acted as "middle man" between us. Without you, hun, we would still be at zero. I owe you a HUGE pot of gumbo! (made with your okra and tomotoes )

Just a quick update. Mim crawled into my lap Friday night and told me that her ears were quiet. She said that her brain didn't have any noises in them and she said everything else sounded "weird". By yesterday, however, the noise was back. This time she said it sounded like the ocean in a seashell. I asked her how she felt. She told me she was fine and that the other sounds outside of her brain sounded normal again. Makes me wonder how long she's had the tinitus. At least now she's able to tell us what's going on.

She has a million questions about her new doctor. We've yet to tell her she'll no longer see her PID. Despite everything, Mim still totally LOVES Doc. Of course she has no concept of the issues that have arisen. Those are better kept between the adults. We're hoping that since Doc has gone MIA, that this will be a natural, flowing transition for her.

We're attempting to prepare her for a change in meds. We've told her that her new meds may make her belly feel yucky for a while, or make her have wierd dreams, or feel tired, but that it will only last for a while. We've made her promise that she'll tell us how she feels so that we can write it down and tell Dr. Frazier - it will help him know if her meds are working or not. We told her it may be hard at first, but she'll just have to be patient and trust that it will all work out in the end.

We've also told her that for a while she'll need extra labs done to see how the meds are doing. Odd child that she is, the extra labs didn't bother her a bit. She loves having labs done - I'm not kidding. Only person I know who gripes that it takes too long to have them done again.

So, that's where we are. Having conversations no parent should have to have with their 8yr old. And an 8yr old dealing with things that no adult should have to deal with.

We got a phone call today and our neuro appointment is Monday morning at 9am. I'm expecting her EEG to be scheduled soon after. Our ENT nurse called and got our appointment moved up - by nearly 3 months! That makes 2 appointments next week. Things are finally moving forward!!

Whew! Neurology appointment is done. We talked for about an hour. It's the first time we weren't hussled out in 10 minutes. Bottom line: she's scheduled for an EEG and another neuro appt. on 5/4. Then, on 5/14, she has an appointment with an eye specialist. The neurologist decided to "deal" with the starring episodes first to rule-out siezures, since that could be the answer to her memory and falling issues. Hubby and I are keeping a callender of when she has headaches, dizziness, and tinnitus from today until 5/4. Once all the info is gathered, we'll see what's next.

Thursday we're off to see our new HIV-specialist, then April 7th back to ENT.

Was a wee bit stressed last night. Lots of thoughts and decisions plauging me. I was rewarded with the rare opportunity of solitude. I wraped in a blanket and sat on my front porch, in the dark, overlooking the mountains. The sky was clear and full of stars. Just me, a mug of hot tea, the night critters, and the stars. It was so quiet and peaceful. I cried a little, hummed a bit, and cleared my head. I was further rewarded that night with 6 1/2 hours of sound, undisturbed sleep.

This is such a crazy journey. Certainly one that I never dreamed I'd be embarking on. Life's funny like that, though, isn't it? We're dancing and laughing and joking surrounded by the people we love. Then, the phone rings and, in that instant, we're hurled into a nightmare where we'll never laugh or joke or love again. We try to get out of it, working hard to change our direction. Days, months, years, that never change. When we can't take another step. When we stop crying because there are no tears left, but plenty left to mourn, life provides a respite. A place under the stars where nothing exists but our thoughts and emotions. In that quiet place we cry. But not for long because then we begin to hum. And smile. And laugh. And understand that the dancing and laughing and joking and love still exist. We still exist. In that moment, we begin again to live.

You might recall these two passages I read from Angels in America at the memorial service in Mexico City. They seem to resonate with what you just posted. Here they are again:

Harper (in the Tropopause):When we hit thirty five thousand feet, weíll have reached the tropopause. The great belt of calm air. As close as I will ever get to the ozone.I dreamed we were there. The plane leapt the tropopause, the safe air, and attained the outer rim, the ozone, which was ragged and torn, patches of it threadbare as old cheesecloth, and that was frightening.But I saw something only I could see, because of my astonishing ability to see such things:Souls were rising, from the earth far below, souls of the dead, of people who perished, from famine, from the war, from the plague, and they floated up like skydivers in reverse, limbs all akimbo, wheeling and spinning. And the souls of the departed joined hands, clasped ankles and formed a web, a great net of souls, and the souls were three atom oxygen molecules, of the stuff of ozone, and the outer rim absorbed them, and was repaired.Nothingís lost forever. In this world, there is a kind of painful progress. Longing for what weíve left behind and dreaming ahead.

Prior (at the Bethesda Fountain):The fountainís not flowing now, they turn it off in the winter, ice in the pipes. But in the summer itís a sight to see. I want to be around to see it. I plan to be. I hope to be.This disease will be the end of many of us, but not nearly all, and the dead will be commemorated and will struggle on with the living, and we are not going away. We wonít die secret deaths anymore. The world only spins forward. We will be citizens. The time has come now.Bye now.You are fabulous creatures, each and every one.And I bless you: More life!The Great Work Begins!

Tomorrow morning we are heading out to meet Mim's new HIV-specialist. I'm nervous and excited. We've put all of our eggs in one basket, so to speak. Our hopes are soaring high and I just don't want to be disappointed.

We're going armed with my notebook full of possible med combos, med history, genotyping, VNG results, research news, and various other amounts of information. We have phone numbers, map quest, snacks, drinks, umbrellas, insurance card, current med. info., and rain jackets already in the car. Cell phones are charging. The kids' school work is copied, sorted, and ready for tomorrow. I can't think of anything that may have been forgotten.

Be assured I will bare all. If not tomorrow, then certainly on Friday.

We made it home about 7:30 tonight. It was a long day but SO worth every minute. My head is still spinning from all the wonderful information we were given. The doctor was with us for a full 2hrs. For the first time in nearly 9yrs, I know that I was heard. Every word we said was taken into consideration. Every concern, every opinion, every question, every everything.

The doctor is looking at 4 possible drug combos to put Mim on. For now she's still on Zerit and Kaletra, but that is going to change when we see him again April 15th. He did suggest that we forego the Zerit burning and just dump them in the trash.

He also suprised us by finding a significant heart murmur. 10 doctors - 10! - since December (the last one being Monday - as in 3 days ago.) and none of them found it. Even Hubby heard it. Now she's got an EKG scheduled for April 24th.

The trip wore her out, but she was in good spirits. It took her about 2 minutes to knock out. She's sleeping soundly.

Thank you to mjmel for lunch today and for a million other things you did to get us to this point.

Thank you to everyone who sent well wishes and thoughts for safe travels. WE are moving in the right direction....finally.

Zerit's days are numbered! Hubby and I were braced for an arguement, but there was none to be had. He looked at her mutations, said that she shouldn't be on it, asked if we minded him taking her off, we both laughed, and I handed him the bottle. For the next while, we playfully pushed it back and forth acrossed the table to each other.

I forgot to tell you: he wrote GOALS! Yes, goals. Stuff that we (not he) wanted to have happen during, what he called, her drug therapy. I have them on our fridge. The VERY FIRST goal was to get her off of Zerit. Then in teeny weeny print, he wrote "but keep taking it for now". It made me laugh.

Longislander, I'll sleep sometime after May 14th (the date of her last appointment). Actually, I slept very soundly last night. My body aches from sitting in the car, but it doesn't bother me a bit. And, you MUST love a man who wears a lilac colored oxford with confidence. and LOVES Star Trek

I have been following this with much anxiety and anticipation - though I doubt no where near the amount you have been dealing with.

Heavens! A doctor that actually listened to you?!?

I am delighted, both for you, because I know how frustrating this has been, and for our Mini, who deserves to be treated with respect and dignity but hasn't been getting much of that from her former docs.

wowweee great news , I felt the same way when my Dr took me off the Zerit...I am very interested i what he reccommends for replacement...... as for Mike I couldn't agree more he is a very generous and caring person........I wish you all the best possible result and so glad that you found a Dr who will listen to you...too bad he is such a trip away...but that means a few lunches with Mike....

Robert, I couldn't agree more. There are so many quality people that we have gotten to know and love dearly. My angel Matt (newt), you know we love you. Kate, we still feel her with us. Rob (Scudd44) who has my heart. Of course Ann and Jan and all my ladies over in the forum. My honeys from AMG - MC. I hate to think where we'd be without you.

Now, listen up....all I did was connect those four (papa, mom, mini, Fraizer) and the rest is Faizers' talent, skill, and dedication. Of course Mom's relentless determination to keep pushing forward and not accepting BS or anything less than quality care is the true 'Queen Bee'. You know, I have been working on this for about a year now......and it finally happened! Mini + a doc who gives a damn. The reward --> great joy.Yippee!

I follow this thread with more intensity than Louisville basketball (a lifetime passion for me...and tonight we are one game away from the Final Four.) This is GREAT news and a wonderful sign of hope. I so appreciate that you take the time to keep the rest of us posted!

Tuesday, April 7th (where did March go?), we're back to the ENT. Not sure what exactly he's going to do. We are going to have a serious conversation about Meniere's Disease. Before we can get the diagnosis, I'm sure he'll want to wait for the EEG results and a report from the eye specialist mid-May.

One of the doctors suggested that her tiredness, dizziness, and headaches could be caused by her murmur. After the EKG, depending what it shows, she'll have a stress test to see how it reacts during various activities. Just another test, I guess.

She seems to be doing better. She went straight from dance class to baseball practice last night. This morning her legs are hurting but she's in good spirits. I've noticed her tinnitus is worse in the afternoon. Not sure if this is typical or if it's because she's "busy" with school in the morning and can ignore it. In the afternoon, things are more peaceful here, so she notices it more. In short, I'm thinking it's always there and she's noticing more when her mind isn't busy.

Hope you all are having a great day. Step by step things are coming together.

In all the craziness, I just realized that I had yet to post the combinations that Dr. F is looking into for Mim. Atripla (because it contains Viread), or Truvada + Kaletra, or Insentress + (something), or something that includes Reyataz.

13 days until she gets her new combo. I'm anxious, but nervous. We have 2 vacations planned literally back to back. We're going to Hershey for a week in May. Then home 8 days, then off to the beach for a week. Her big dance concert will be 3 wks into the change. I'd really like most of the side effects to be gone by then. Or, better yet, just never show up.

I've been reading about sleep problems that people are having on Atripla and Insetress. Although lack of sleep = long, whiny days, it seems to be the "easiest" side-effect to manage. We can re-arrange her schooling schedule, add time for extra naps, or just sit and rock for a while.

Mum

edited to add: back in post 104, I told you about the doctor who called to tell me Mim's ID numbers and how he was "shocked" by her downslide of T-cells and "agreed" that she needed to see a doctor ASAP. Here's a suprising update: I haven't heard a word from him. One day I'll be able to look back on all of this and laugh. Today is not the day.

Mum - Isentress and sleep... Donít put too much weight on anecdotal internet evidence. Iíve been on Isentress/Truvada for about a year now, Iíd heard/seen the same rumors floating about that sleeplessness is a problem with the drug. Iíve never had a sleeplessness night caused by the combo. Iím also a peer counselor and have talked to more then a few others on Isentress combos and have yet to run across a documentable case of Isentress caused insomnia.

Better still my CD4ís have finally, after five years of assorted combos, taken a significant upward jump. From a count of 156 six/eight months ago to a 318 count as of last month. (My ID Dr and I had begun to resign ourselves to the reality that my immune system may have been too damaged to recover. I went undetectable within two months of starting meds, so we knew the prior meds were suppressing the virus) When the up-trend started I held my breath, Iíd seen small upward swings from quarter to quarter with other combos, but nothing had been sustainable. Couple the numerical improvement with absolutely no side effects I couldnít be more pleased with the combo.

Bottom line, I donít believe you have a concern. Keep Mini busy, blissful, and bouncing about as sheís best able and sleep will follow.

LOL Ė Iíd love to have the sleep back I had as an eight year oldÖ no worries, no cares, no monsters under the bed, just me and a bed full of stuffed friendsÖ..

Best of Luck to Mini and MumTodd

Logged

Life is short, Break the rules, Forgive quickly,Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

It is strictly speaking too early to say what Isentress will do in terms of side effects. It is important to note and give weight to individual's experience as the side effect profile emerges, but not pay too much attention to it until enough people have taken the drug to form a rounded view.

On the drug choice, I personally would go for Isentress or perhaps Prezista + something. I would deffo not return to efavirenz. I would avoid Reyataz until the heart murmur question is resolved.

Isentress, while off-label, has distinct advantages in terms of lipids. Prezzie's not too bad tho, only uses 100mg Norvir in the best formulation. Also Prezista now has a good pediatric study to support its use.

Someone just posted in another thread about Isentress and sleep issues, but if you read the thread closer the cause is most likely their treatment for Hep-C. This is a primary reason to not go by things written on a message board, or at least read them with a skeptical eye.

Putting her back on Susteva (or a drug containing it) isn't my first choice, either. The years she was on it, we watched her lipid panel jump WAY out of control. Just over a year of being off of it, and her numbers (except for that crazy jump in tris) look really good. Whatever side effects she had from it, we'll never know. She was a newborn so who's to say whether she woke up due to bad dreams, or because she was hungry?

Matt, off label, heh? Has she ever taken an on-label combo? I believe I still owe you a tree - and a kiss What about keeping her on Kaletra? She's done so well on it and it would be one less med she'd have to adjust to. Also, as you've posted to me, it has a good reputation for getting into the brain. Considering her neuro issues, I'm thinking she needs all help her brain can get.

We counted up the Zerit we have left to see if by some miracle she didn't have enough for the next 13 days. Unfortunately, there are enough for those 13 plus 7 more. I wonder how big of bonfire we can make from 14 Zerit.

Below is an excerpt from the results of a head-to-head study between Isentress and Sustiva. Insomnia is one of the possible side effects for each but it's very minimal and it's smaller with Isentress than with Sustiva. In other words, it has been known to happen but the probability is rather low:

ISENTRESS had neutral effect on total and LDL cholesterol, or triglycerides. The mean changes from baseline at Week 96 for ISENTRESS and efavirenz, respectively, were +1.1 mg/dL and +24.0 mg/dL (p=0.002) for total cholesterol; -5.8 mg/dL and +4.4 mg/dL (p=0.045) for LDL cholesterol; +7.4 mg/dL and +13.0 mg/dL (p=0.017) for HDL cholesterol; -10.8 mg/dL and +13.4 mg/dL (p=0.145) for triglycerides; and -0.7 mg/dL and -0.7 mg/dL (P=0.689) for total: HDL ratio.

So how do we separate this out from things like that 70% of HIV+ patients experience insomnia? I've had frequent insomnia for a decade, and changed meds 5 or 6 times over that span. I have a hard time pinpointing this on one specific mediation.

Guess who I just got a phone call from. Never mind, I'll just tell you: Dr. Fraizer, our new HIV-specialist. What did he want? Nothing much. Just to CHECK UP on Mim and see how she was doing! Good gravy you have no idea how wild that is to me. We went from *still* waiting for returned phone calls made since Sept. 09 to having a doctor who calls just to see how things are going even though we'll see him again in 9 days. I think we will arrive bearing gifts of homemade chocolate truffles. I can't get over it. Blows my mind. Seriously.

Tomorrow we are heading back to Dr. D's for a follow-up (ENT). I'll be sure let everyone know what happened.

I am just tickled pink that she has a REAL doctor now! WOO HOO. I agree with what others have stated, mjmel is a VERY very nice guy, and him helping you out with all of comes as no surprise to me.

Honey, let me tell you what to do with that excess Zerit: Grind it up into a fine powder; then bake it up into some brownies or cookies and take them to the a**hole doctor as a "farewell gift" for all his GREAT efforts on Mim's behalf.....

Love,

Alan

Logged

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Some days it just doesn't pay to get out of bed. When we saw Dr. Fraizer on March 16, he noted that Mim's lymph nodes were swollen on the left side, but the right side was fine. He said we'd wait and see how they do. Today, Dr. D said that the nodes are her left side are significantly swollen and there are 3 smaller nodes on her right side. Now she's on Omnicef (250mg 2x/day for 14 days). If the nodes are nonreactive, then they'll have to be removed and biopsied. Or, if Dr. F decides they need to be biopsied, then we won't wait.

Mim called Dr. D after filling her prescription to give her a piece of her mind. He told her that he'd make sure she got pills and instead it was liquid. He wrote it for 250mg / dose and pills start at 300mg / dose. She asked if she could call him and let him know. I figured what the heck and dialed the number myself. It was really funny. She's still stuck with the liquid, but she feels better.

Next bit of news. Dr. D has pretty much ruled out Meniere's Disease. Good news, right? It should be, except with the discovery that Mim's tinnitus is only on one side (her right), he's leaning heavily to frontal lobe siezures as the cause. If it was on both sides, it would point to migraine induced tinnitus. We'll know more after her EEG May 4th. We go back to see Dr. D May 12th.

Today Mim lost her glasses. Ok, truth be told, they weren't lost, she just couldn't remember where she put them when she took them off. Luckily we had an extra pair. Then, she forgot where she put her shoes. Those, we found. Now she's breaking into tears. It's going to be a very long night.

Not what we wanted to read today, I think we were all praying for some real answers.The glasses and shoes thing is pretty much any child stuff, but the rest of this, no child should have to go through. I'm glad she got to call the doc and give him a piece of her mind!

I wish there was something any one of us could do to make this all better.

If she does end up crying herself to sleep tonight, I hope she at least has sweet dreams~

Last night wasn't as bad as anticipated. She fell asleep quickly, waking up in decent spirits. We have no where to be today so PJs are the uniform of the day.

I emailed Dr. Frazier to update him about her appointment yesterday, the findings, and the addition of Omnicef. Haven't heard back from him but it's ok. He's called twice in the last 2 days, so he's off the hook for the email (for now )

Happy Passover!Mum

edited to add that no hook is necessary: Dr. Frazier returned my email this morning. Someone must have tipped him off about the truffles.

Hi mum...Sorry this ordeal has been going on so long...On this, the first night of Passover, though I am not a deeply religious man, I have been invited out to a Seder and am about to head out. Know that I will have Mini very much in my thoughts tonight...Can you tell Mini that Jody loves her this much (hands held wide apart) and that I can't wait to see her in Boston this summer !

Jody

Logged

"Wake up to find out that you are the eyes of the world". "Try to discover that you are the song that the morning brings."

Thank you, Jody. I passed on your message and your hug. Mim asked if that was from the really tall guy with the bandaides.

Took Mim and #2 to baseball practise last Thursday. It was really funny. Poor thing can't catch or throw a ball to save her life, but good grief she can HIT! She's not a very fast runner, but she can HIT! Our #2 (8 1/2mths older than Mim) is the exact opposite. He can't hit worth a flip, but can field the ball and throw from the fence to 1st base with no bounce. He's got quite the arm.

Prompted by an email from Dr. F, I asked Mim if there was anything she'd like to talk to Dr. F about when we see him on Wed. Without hesitation, she said, "I want him to make me not be a diabetic anymore." I wanted to cry. Of all the things that are going on, she want to be able to eat like everyone else. That's her definition of "normal". So different from mine.

Tomorrow is the day. We'll leave our home sometime around 7am to make the 3hr journey back to Chillicothe and our new best friend Dr. F. Zerit's days are dwindling and I'm anxious to see the new combo he wants to put Mim on. A wee bit nervous about the nodes and what he'll decide to do about them. We were only presented with 2 options: leave them or have them removed. Needle biopsies weren't even mentioned.

Other than that, she's doing really good. Hubby took the kids roller skating last night and they had a blast. He said Mim went round and round all by herself. He also said that 3 boys gave her their phone numbers I asked her about it and she said, "Yeah, they did, but I threw them away. Why would I want to call a boy? It's not like they'd want to come over and play Barbie with me." That's my girl!

Today will see me trekking myself to the doctor. My lungs are giving me fits again. I thought I could beat it myself, but it's just not going to happen that way. More steroids, more albuterol, more diflucan. Not my idea of a good time.

I'll post tomorrow night and let you know which combo Dr. F decided on. Have a great day!

May I introduce you all to Mim's NEW combo: Epzicom boosted with 3TC and Kaletra.

She had a HLAB5701 test to make sure she won't have a reaction to the Ziagen part of Epzicom. We should have the results back in 5 - 6 days. She'll take 1/2 a pill of 3TC and Epzicom 2x/day for 3 days to reduce the side-effects. After that, she'll go to a full pill of each twice a day. Let the Zerit countdown begin....NOW!

We go back in 4wks for a check up and follow-up bloodwork. She'll have bloodwork here at home 6wks after that. Then, if her CD4s go back up and stay steady, then we'll move to appointments every 3mths (maybe 4, but couldn't sell him on 6mths )

He also wrote her a prescription for OT / PT. There's a PT that's worked with her off and on since she was 8mths old. I'll set up an appointment tomorrow.

I'm doing a bit better. I'm still coughing and congested, but mostly at night. I slept a bit better, but still only for about 2hrs. Hopefully tonight will be better.